Friday 1 June 2018

Calm? Who? Me?

OK. I'm back in my PWC. I am not exactly sure what they did with it, but I understand there are parts on order, so it looks like they will either be here to do more service work, or perhaps they will ask for it to come into the shop again. At least now I know I can survive in my manual chair. With help, perhaps I can even get out, either via a pusher or in the van, or some of both.

It certainly has been difficult in the manual chair. I discovered that I can barely make the slight incline into my bathroom, and I can forget altogether about going out on the deck, over the ramps on both sides. I also discovered I need to secure the indoor ramp before something truly serious happens. I did find I could still move with some ease around the apartment, excepting the ridge between the dining/kitchen and the rest of the apartment. I made it, but it was not easy.

The whole weakness in my arms and upper body has become significant. Feeding myself is continually becoming an increasing challenge. I no longer bother trying to pick most things up once I drop them on the floor, unless it is truly urgent. Even in these cases I get stumped sometimes; I end up waiting for an HCA to arrive and help me.

I am not sure how long this process in my arms and shoulders will take to be complete, where the upper part of my body is as paralyzed as the lower part. I have this calm sort of acceptance about it happening, oddly coupled with the deeply seated anger I have about having ALS. I'm good, until I snap. This situation has lead to one key decision on my part. I am increased my medications, the ones I have for depression and PBAFTD. Perhaps that's why I am so calm about it.

3 comments:

  1. Curious how your mom is doing? Have not heard you speak of her lately.

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    1. My Mom is plugging along just fine. Her Alzheimer's is progressing although slowly. Loss of short term memory is significant, but she is fine in almost every other way. There is no doubt in my mind that she will outlive me.

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  2. That’s any parent’s worst nightmare ... to outlive their child.

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